Saturday, April 30, 2011

I Love You More Today Than Yesterday But Not As Much As Tomorrow

Yesterday's post was lamentation and memory.  Today is about looking forward.  Yesterday, while Liam played laser tag and bumper cars with his many friends and came home exhausted with a car trunk full of gifts, I was shell shocked at how far we've come.

Today, Liam went to his cousin Lily's birthday party.  He was tall enough for the huge water slide (exactly four feet tall) and went down at least fifteen times!  He was fearless.  When he was three he made me hold his hand to go down the slide at the park. Today he bolted down that water slide as fast as he could go and never looked back.

If there is one thing I could give Liam, one thing I wish I could preserve for him forever it is that "never look back" fearlessness he has right now.  I wish I could bottle it for him for all the days ahead when I know we'll be back in the hospital be it for a cath, a pacemaker, or a sixth open heart surgery, or all of the above.  I'm not jaded or fatalistic, but I am wise and informed.  I'm not so naive  as to believe that every day will be as great as today, but I'll take as many as I can get.

Still, the fact that Liam is so fearless, so generally unaware most days of anything but toys and water slides and fun, well THAT alone is worth celebrating.  Today is the day I will remember and the thing I did not have during the darker days when we started this journey.  Today is a treasure that will make me more fearless, and that is my son's gift to me.  I am so blessed.

Friday, April 29, 2011

At Least You Can Take Him Home

Eight years ago this morning, I awoke in a fog.  The night before I'd been gutted during a five minute C-section after fourteen hours of hard labor.  It was about 7:15 am when I woke up, and Liam was twelve hours and ten minutes old.

After holding Liam for a while in the Neonatal ICU, by 9:30 I was back in bed, and a doctor was telling Jim and me that we had three choices:
  1. Heart Transplant ("your best option")
  2. Several Palliative Heart Surgeries ("higher risk and my confidence is low") 
  3. Compassionate Care ("at least you can take him home")
Ultimately, we had to go with #2 because Liam couldn't survive the wait for another heart, and even if he had a transplant, that path was fraught with far more pitfalls than we knew on the morning after he was born.

So, I get a little crazy around the time of Liam's birthday with lots of celebrating.  Tonight we're having a big party and I'll share some photos tomorrow.  Tomorrow, we'll fade away from the intensity of that memory and get back to the routine of every day.

But just for today let me say, THANK YOU, to every other doctor, nurse, tech, advocate, volunteer, chaplain, cheerleader, and prayer warrior along the path that led to being able to take Liam home from school every day and send him again in the morning.  As "over it," as I am most of the time, I never take one minute for granted, and today of all days is the right day to remember how far we've truly come to bring our son home.

Wednesday, April 27, 2011

April 27th - The Most Boring Day Ever

When Half Heart, Whole Life was still titled Informed Consent, the prologue was about my neighbor's suicide on April 27, 2002, nine years ago tonight.  It was a Saturday, and I was working on my thesis (which I finally finished last year and then graduated last May).  I stayed up all night watching a real life CSI scene from my office window. 

The relevance to my book was that, exactly one year later, I  checked into a labor and delivery ward and was then induced to deliver Liam.  Eight years ago tonight, it was a Sunday, I fell asleep childless for the last time, and I woke up the next morning when my water broke.  Death and life and the intense and precarious balance on the edge all tied together with spring weather and a seemingly random date.

I took the prologue out and just use that incident as an anecdote to underscore how cyclical it all is.  Half Heart, Whole Life is very different from the first drafts of the book because it changed from a retelling of seemingly random but somehow connected events to a tapestry of grief and acceptance.  The texture of the book has made it more absorbing and meaningful, and I don't miss the prologue.  It didn't work for the readers, and books are for readers not writers.  The book is how we connect to each other.

Still, here we are nine years after a death and eight years after the beginning of a birth.  We've covered so much ground as a family, so much fear and so much hope to get to here today.  It is a Wednesday, and I am not watching the aftermath of a suicide, not anticipating the birth of my first child whose survival is in question.

It is Wednesday, April 27th, and I am sitting with my husband on a couch while my two children, with their own lives and interests, entertain themselves during "no-TV week."  It is a Wednesday and the only excitement in my home comes from the little boy who's been eying the boxes wrapped in Spider Man paper and waiting eagerly for this day to come and end, without meaning or relevance.  This ordinary Wednesday is simply the last day standing between Liam and turning eight, between gifts, and cake.  He doesn't care about April 27th, he's too excited about the 28th.

Happy birthday to my little boy, who still believes in the Easter Bunny and the Tooth Fairy and who sees nothing extraordinary about the ordinary, misses his TV, and is just like any other soon to be eight-year-old boy.   Tonight is just a Wednesday and when I wake up on Thursday, my world will probably not have changed at all.  That fact and the simplicity that surrounds me right now is more miraculous than any of the drama I've known over the past nine years.

Wishing everyone on the A-Team the most boring April 27th you've ever had and the capacity to appreciate how truly extraordinary the ordinary really is. 

Sunday, April 24, 2011

One Trick Mommy

One of the issues I've had with the whole "publishing the book" equation is that I'm caught in a cause.  It's a sticky situation because I am clearly passionate about Congenital Heart Disease (CHD).  Heck, I started a whole 501 c3 and have been part of a growing movement and even a leader in that movement of parents taking an advocacy role for their kids.  Yes, I have a cause, and the upside of that is that I have a platform, which is something that book publishers and agents want.

The downside is that I am not a cause onto myself and neither is Liam.  Before I became a mother (almost eight years ago) I was a published poet.  I worked hard on my craft.  I was also a technical writer for a decade and have a master's degree from a Journalism school at a respected University.  So, I'm not just some mom with a cause who decided to write a book.  Those kinds of parents have ghost writer or co-writers who are professionals.  I'm both a heart mom and a writer, but it's hard to get that across.

I'm not a whiner or a complainer. I have a legitimate problem, and my solution, (my dated poetry credits don't get me far because publishers and agents run fast from poets) is to work on establishing writing credits about non-cause topics.  In that vein I've been up late writing essays and working on projects to submit to literary journals.  It's more work, but I've never been one to shy away from hard work, but it's an attempt to win instead of whine. 

Being more than a one-trick mommy with one cause means building my credibility while maintaining my platform.  I'm still working hard, but the book is in limbo while I build.  Keep visiting the blog and commenting!  I need the moral support and encouragement.  Yesterday was my birthday, and I am starting a new year of life and hope.  Liam turns eight on Thursday, so this is a time of reflection and a time of great joy to look forward to many possibilities for our whole family. 

Monday, April 18, 2011

In Bad Taste

Yesterday in one of my Facebook groups a heart mom with a new little baby was asking for advice from us veterans.  Apparently, some people (more than one!) told her it was "in bad taste" to be photographing her newborn son in the hospital.  I don't get deeply and passionately angry about much. Wal-Mart makes the list, but else-wise I'm a live and let live kind of person.  However, I've been fuming about this since yesterday.

While I was writing my book I came across a blog entry by a CHD survivor.  She didn't like that parents were sharing their kids' pictures online because she felt it left the children vulnerable to bullying later in life and possibly would make them feel exposed.  I give her credence as a survivor, but in the book I took exception to two things 1). the idea that we should EVER tolerate or give way to bullying in such a way that it changes what we do in our private lives and 2). the notion that any child who survives such a severe condition should ever be ashamed of what it took to just live.

I give CHD survivors a wide berth because they have to deal with far more than I understand, and Liam is one of them so they are like extended family in my mind.  However, anyone who neither has CHD nor  has consented to their newborn's open heart surgery before they ever leave the hospital needs a reality check about "bad taste."

More than 100 mothers responded to this woman's call for advice.  Not ONE told her that she should not photograph her child.  Several who had not photographed their own children, or felt they hadn't done enough in that situation, encouraged her to take many pictures.  Some women's children have died, and those pictures are more precious to them than most people can even imagine.

In an effort to bridge the knowledge gap, I present the case for capturing your child's first moments regardless of where they happen: 
  1. First and foremost, that child might die and those may be the only photos that parent ever has of her child.  Cold hard fact - if people find that distasteful then they need a reality check.
  2. This child might survive, and when he/she grows up deserves to know the reality and severity they overcame.  Additionally, doctors consider it an "epidemic" that so many adult survivors of CHDs don't understand their defects or get proper follow up care.  Hiding from the truth does no one any favors.
  3. As moms we're not going to get those birth announcement pictures that healthy babies get.  Some of us get helicopter transport, months on end at the hospital, and an overwhelming fear of losing our child, but we don't get what other moms get - so don't begrudge us our pictures.
  4. Matthew Brady is famous for his contributions to documenting the cost and reality of the Civil War.  Until the photojournalism of Vietnam, most Americans on the home front could not appreciate the true cost of war.   In fact, it's been the absence of coverage of our current wars that has been attributed to American apathy for the conflicts and our involvement. 
War is Hell, and honesty is never in bad taste.  Fighting for your child's survival is also hellacious and I've been damned enough on this road, that I'll be damned again, before I let any "civilian" tell me or my sisters in arms that telling the truth by capturing our children's fight is in "bad taste."

Would these people tell a mother of a child with cancer that she shouldn't photograph her child until his hair grows back?  Would they tell a mother whose child has cerebral palsy that she needs to crop out the wheelchair?  A friend was photographed after her double mastectomy.  Was that picture hard to see - YES, of course it was.  Know what's harder - having both of your breasts removed, fighting for your life though chemo, and worrying about leaving your children behind.  If I thought, "Oh, that's too hard for me to look at," then I would never be able to begin to empathize with my friend and so many like her.   It is the cost of survival.  It is the truth. If my friend is hurting, who am I to tell her to be quite because her pain hurts me?  Talk about bad taste.

So, is it hard to look at a tiny helpless little baby on life support machines? Of course.  Imagine how much harder it is when it's YOUR baby. Imagine that you are expecting a child and after he is born people don't want to look at him.  Think about how cruel that is. It's not like she's showing of her placenta, it's her child for God's sake.

If I treated you to a fancy dinner, yes it would be in bad taste for me to show you the bill.  When the subject is survival, the vulgarity is not in the battle itself but in the public's, and especially fair weather friends',  refusal to recognize the cost of it.  Polite society has historically turned a blind eye to domestic abuse, racism, and a plethora of abuses against humanity.  It is not vulgar to be honest and bear testament to the truth.  It is in bad taste to place one's own illusions about how life "should" be above the simple yet strenuous act of showing human compassion.  It's unquestionably rude to assume that one's personal discomfort supersedes the extraordinary pain of a woman whose child is close to death.

Who is so bold and so conceited to expect such a mother fighting to edit her experience for their own comfort?   That's the most extraordinary example of hubris I've ever heard.   Like so many situations in life, it's what the statement says about the speaker that is so much more telling than the words themselves.

Saturday, April 16, 2011

Birthday Bonanza

April in birthday central around here.  My first niece turned fifteen on the second, my fifth nice turns six on the twenty-second.  My mom turned [redacted] today, I turn thirty-seven next Saturday, and Liam will be eight on the twenty-eighth.  Whew, it's an expensive and exhausting month! Oh yes, and then there's Easter and Earth Day.

I have always loved April because it starts to warm up, green up, and things start to look up.  It's just an upward kind of month, busy as it may be.  I'm feeling some warm fuzzys as I contemplate all I have, all I've had, and all that might be.  So, as a Taurus I bestow upon you like my kindred spirit Ferdinand the Bull all the beauty and flowers of spring and hope your April shines.

Sunday, April 10, 2011

Forgetfulness is its own blessing

I just realized today, on April 10th, that Liam's five year fontanniversary was five days ago.  I missed it completely.  That day upon which so much was hinged and a week after so much became unhinged was pivotal in Liam's survival and near-loss.  It was the bridge we waited three years to cross.  Literally, for years it was called "the bridge to transplant" when in reality it was the detour away from transplant.  It was monumental, and five years later I forgot.  Thank God!

I didn't write my book for catharsis because I thought I was already there. I forgot the Fontanniversary last year too before I was far into writing Half Heart, Whole Life.  I forgot his Fontempt anniversary, six years, this February.  I forgot about the Glenn, and I let these terrible memories slip my mind year after year lately.  That's a good thing.  I'm not hung up on those moments anymore,  but the book did help, unintentionally.  Mostly, the five year anniversary that's two days from now has lost some of its bite because I've taken hold of it and decided what I want to take from it.  That part of writing the book was empowering and meaningful. 

You've already read about that bad day, it's Chapter One, and it wasn't the Fontan on April 5th but the infection disaster on April 12th.  April 12th was not the terminus of months of paralyzing anxiety.  April 12th just happened and it was worse and better than the surgeries in its sneak-attack quality.  It was easier to bear the oncoming since it was sudden and brief, but the fall-out of nearly losing my child was more violent with no time to prepare.  There's never been a surgery, not even a simple cath that didn't bear the risk of losing my child, but April 12th of 2006 was as close as we'd come since May 12th of 2003 to that reality.

I know what hangs over our heads.  I never go easily into an ultrasound room.  Even now, just a few weeks ago I watched Liam's heart on the screen and I knew what I saw.  I watched the vacant room inside his chest, like a tiny forgotten closet that would have been his right ventricle when the tech showed it to Liam.  I could see the effects of surgery and the cause for all of it.  I saw with my own eyes that Liam's mitral valve was regurgitating without ever being told. 

In these eight years, I've learned how to read the screen and the faces in the room with me.  I know the deepest meaning of the term "cautious optimism," because it's the tone that colors my life. 

So, I am cautiously optimistic that I'll keep forgetting those days of worry and woe, and I'm glad I wrote the book when I did so that what mattered from those moments, the lessons to how to tend to a garden of cautious optimism are preserved.  More than anything, I'm pleased to be practicing what I've preached.  I'm so blessed in deed.

Friday, April 8, 2011

What's in a Name?

I am chuckling because I just read an e-mail addressed to "Amy," and over the years, in fact at least monthly I am called Amy, Amber or Angie.  Probably Amber more than any other name.  I'd love to be mistaken for an Amelia (I like that name) or even Audry or Abigail, but no, Amber and Amy are the most frequent substitutions.

Typically, I don't mind.  It's not easy to remember peoples' names, and personally I have a real problem remembering names myself.  It's just that I was feeling particularly anonymous lately so when someone responds to the wrong name in writing when the sending email address is it leaves one feeling rather invisible.  I actually had a customer I've been working with for four months call me Amy in an email last week, so this is a great start to my birthday month.

Still, I know it happens all the time.  One of the kids' teachers called Jim Jeff last week.  What are your unintentional pseudenyms?  Tell me, I really want to know!  Let's feel less invisible together!  Share your joy!

Thursday, April 7, 2011

Tell You A Story

I'm bored with all this blog promotion stuff especially since I can't promote the real book.  I was supposed to sign that bad contract yesterday - whew did I dodge that bullet!  Still, I haven't had a new follower in three days! Where are you A-Team? 

Anyway, to relieve my panic that we're going to top out at 106 followers, let's try this:

I can read the stats for my post.  If y'all (channeling Charleston) can share this post with friends/family/and drive visits to the site up to 200 views on this post then I'll post Chapter Three.  I'm telling you, it's better than Chapter Two and not as sad as Chapter One.

Now, to make it worthwhile to read, I'm going to share a little story.

Last night, I combated the telecommuter blues but buying some nice things - a lamp and mirror- for my home office.  I also tried to reign in my clutter and recycled four large grocery bags of papers.  While sitting on the floor, I happened upon all of Liam's kindergarten homework that I'd saved from two years ago. 

I kept some, especially the drawings, but the traced alphabet and numbers could go.  I was shuffling through, page, after page, after page - I have a clutter problem - and with each page I smiled broadly remembering my little five year old who is now nearly eight.  So much homework, artwork, projects, report cards and then in the middle of it all was the one page that defines our story and makes Liam's school folder different from Moira's and most other children's.

There it was, the page that I, not Liam, had made with a diagram of his heart, a list of his medications, an explanation for why he needed extra supervision on the playground while still on plavix for the stent that was placed between his heart and his lung the week before he started kindergarten.  It was just there with all the happy papers, and it shocked me.  Because in my spot on the floor, despite being surrounded by a two-foot stack of medical bills and receipts from over the years, for just a little while I forgot that part of my life is being afraid and knowing words like hypoplastic that spell checkers don't believe are real. 

And as intrusive and annoying as that paper was, I am grateful to be at the point where I can forget because I never imagined I'd be there, even for a few minutes.  I am also grateful, that in the dozens of pages of Liam's prolific kindergaren experience, it was only one page that was anything but the preciousness that can be found in any five year old's artifacts of a life lived fully.

That is the point of the book.  And I remember it every day, that this is the point of the fight, the point of living, and it's why I believe someday it's going to happen that I can share that message with more people.  It matters. I believe that it matters.

Friday, April 1, 2011

Why I Won't Self-Publish (yet)

Several people have asked why I don’t just self-publish through LuLu, createspace, etc. or some such thing.  That’s the same as a P.O.D., so if I did that not only would I be 100% responsible for all marketing of the book (very difficult since I have a full time job and a full time family), there could never be any book signings, readings, or reviews, and it would NEVER get into a library or a bookstore.  The only people who would ever read it are the people who know me or are directed to it by people who know me.  Sure I know a lot of people, but publishers can get to people I don't know, and that's important.

I did publish The Heart’s Content (a poetry compilation that was a fundraiser for Hypoplastic Right Hearts) on LuLu, and that was fine because it was for a nonprofit.  We sold about 350 copies of the book.  Quite frankly, for a poetry book, that’s actually very good.  The Heart’s Content turned a very small profit, but we did it primarily as an awareness tool, and it raised awareness for February/Heart Month.  In all it was a success, but it was SERIOUS WORK to sell even 350 copies of The Heart’s Content.

I want to sell more than 350 copies of Half Heart, Whole Life.  I want it to be bigger than that, not because of the money but because of the message.  I want people to read the book, and to do that they have to be able to find it.  I also want it in bookstores because I even wrote in the book itself about how dejected I felt when I went to our enormous bookstore the week Liam was diagnosed and I couldn't find one single book on CHD in the entire store.  I want people who need this book to find it easily, because when they go looking for it they won't know who I am or even where they are with such horrible news.

I also want readers who aren't heart parents to find the book.  This book is about living through crap and coming out still loving life and loving it even more.  To quote myself, "Life is a shit buffet, and everyone gets a turn through line, it's just that some of us get bigger plates."  Anyone who reads Half Heart, Whole Life can relate to how devastating it is to have your expectations shattered and to be afraid.  No one gets through life without taking on some pain, and the book is about how we cope and learn.  You don't have to be a heart parent to get that.   By limiting myself to self-publishing, I won't get too far past that market segment. It's my best and most important market segment, but it's not the only one.

Very few self-publishers are successful and those who are make it a full time job.  I can’t do that.  You can’t really blame bookstores for not carrying books that sell so low and don’t have a real marketing campaign behind them. Even Target's pharmacy keeps low-selling items local residents request behind the counter instead of on the shelves where the big companies give huge discounts to get their items stocked.  I don’t blame the booksellers for their hesitation to sell self-published or print-on-demand works.  Publishers and distributors (who work for publishers) network hard and pay a premium to get their books noticed.  If I self- publish I’ll be buried at the bottom with all other self-published books and won't be able to compete.

Then there is the issue of legitimacy.  Sales aside, there is a prejudice out there against the quality of self-published books both from libraries and bookstores and even Amazon and the ibookstore.   The prejudice is based on a huge kernel of truth.  ANYONE and I mean anyone, including crazy KKK people and those who would like to teach your teenage son how to make a pipe bomb, can self-publish a book.  Some (not all) people who self-publish believe they can just write it and print it without doing the very hard and necessary work of editing.  A person who edits his own work without any help from others is kind of  like a doctor who treats himself.  You can’t realistically be objective from inside out.  

Yes, I worked extremely hard on my editing, and some other people who self publish have done the same.  I’ve recruited several writers and heart parents to help me edit and have enlisted many active readers and applied their feedback that helped the book.  I did that, and I do believe in the quality of Half Heart, Whole Life. I think it's good enough to be a "real book," no offense to the few very good self-published works out there.  They do exist, but they're like the Big Foot - very hard to find. 

However, when thrown in with a bunch of really bad crap, good self-published books get dirty by association.  It’s not at all fair, but it’s reality.  The reader has to be very careful when looking at self-published books, and it’s easier for them to go with the mainstream than to seek out self-published works.  Yes, absolutely and undeniably, there ARE  good self-published books out there, but there is far more crap, and I don’t want Half Heart, Whole Life lost in the mire.

Would I ever self-publish?  Maybe. I'm a never say never sort of girl, but I’m going to give myself at least one good year before I seriously consider that route.  I’ve only been querying agents for three months at this point.  Honestly, it's only two real months  because after the last batch of interest I did nothing since February 12th.  

That means that in less than two months eight agents wanted to see my work, so even though I don’t have a legitimate deal yet, I owe it to the book, the story, and the people who might read but don’t  already know me to do my best to make it successful.   It’s frustrating and hard to wait, but I must keep the faith that this book deserves a good home and a broad audience and that it's worth it to do the work to get it published just like I did the work to write it well and edit it effectively.

I believe in Half Heart, Whole Life, do you believe in it?  Tell your friends to follow the blog and strengthen the argument to publish it.  Get us to 150 followers and get a peek at Chapter 3.  If a year from now I have 1000 followers and still no contract, we'll talk about self-publishing again. 

The Week that Almost Was

Whew, this was a very long week.  On Saturday I was surprised by an offer from an agent who had previously rejected Half Heart, Whole Life.  On the one hand it was exciting that someone wanted my book, on the other hand it was weird because agents really are not supposed to offer a book to a publisher unless they have a signed or verbal agreement from the author.  This agent had neither, and I was genuinely surprised to hear from her.

Anyway, fast forward to today after a meeting with the publisher and lot of stomach knots and misgivings, and I turned it down.  The publisher is a print-on-demand (P.O.D.) outfit which I didn’t know but learned.  This means that 1) the books wouldn’t be stocked at bookstores, 2) Amazon would carry it but it would be buried and the only way anyone would buy it is if they go looking for it.  

Aside from the whole P.O.D. issue, they don’t use a distributor who helps get the book into bookstores, which is kind of a moot point since bookstores don’t stock P.O.D. books.  Also, they’ve only sold 8-20 copies of the books they have sold online.  In addition to their lack of access, low sales, etc., they would keep 85% of the profits of me directing people to buy the book.  So . . . not really a good deal for me.

My next post coming shortly - WHY I’m NOT self-publishing.